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Beth,
NIH in Bethesda, MD has the Promacta trial also and everything is paid for there. You don't even give them an insurance card. The criteria for their trial is different from Moffitt's (lower blast numbers) so Al was not able to go there for treatment and ended up at Moffitt.
But I personally check clinicaltrials.gov on a regular basis to keep up with what is available. On more than one occasion I have handed a study to our local doctor and asked "What about this?" and it would be something he had not seen before and he would call the investigative doctor for the trial and discuss it.
I know you and Earl are exhausted and frustrated, Beth, but hang in there, we are all here for you. I am so hoping and praying that all of our miracles are just around the corner.
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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